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The Dame Vera Lynn Trust School for Parents

Bobby and Charlie Grainger will be celebrating their third birthday later this month. Like most twins, they have a close bond. They share a room and Bobby sometimes sings to his brother when they go to bed.

But sadly, many things that come naturally to Bobby are more difficult for Charlie. When Charlie was twelve months old, he was diagnosed with Cerebral Palsy, an incurable motor condition that restricts physical development.

It is a relatively common condition, affecting about two in every one thousand births, but it can have a dramatic impact on not only the individual but also their families. In Five Oaks near Billingshurst, there is a special school that is achieving incredible results in helping parents develop the skills of children with cerebral palsy.

The Dame Vera Lynn Trust School for Parents is located next to the SCOPE-funded Ingfield Manor School, which itself offers specialist conductive education for children aged five to sixteen. The school for Parents was also funded by SCOPE until 2000, but now relies solely on donations made to the Dame Vera Lynn Trust, with no government funding.

The school offers a priceless service for children aged up to five, and their parents. Charlie and Bobby’s mum, Laura Grainger, said: “At twenty-eight weeks I went for a scan and it was all fine, but at thirty weeks they said the babies had to come out immediately. It was a bit of a shock. Everything seemed fine initially. Bobby weighed threepounds and was in the Special Care Baby Unit for five weeks and Charlie was there for seven weeks and weighed even less. But when we got home, we found Bobby was doing things that Charlie could not. I knew something wasn’t right.

“Charlie’s hands were fisting a lot and he wasn’t able to hold his head up. We went to the paediatrician for a follow-up appointment and they told us that they suspected that Charlie has Cerebral Palsy. The boys do play well. Bobby doesn’t really understand and sort of wrestles Charlie a bit, like all boys do! But they are in the same roomand at night Bobby sings and Charlie squeals with laughter. They like being together – we’ve had instances where we’ve had to go to hospital for procedures and found that Bobby can’t settle without Charlie being around.

“Someone recommended the School for Parents to me and it’s been brilliant. We learn lots of things here that we can take home with us. We learn how to sit the children, how they can use the sofa for side-stepping, for example. We also develop feeding and potty training skills.

“It also gives you the confidence to push the children a little more than you might if you were on your own. I remember when I first came here the children were sat down and I was worried as Charlie could not sit. It meant he had to work that bit harder and this all helps the children become more independent.

“It’s great to see other parents too. They are the best source of information! We talk about various centres, ideas, and things like disability allowance. Doctors can help of course, but mums know best!”

There are currently sixty-six families registered at the school, who attend every week. There are twelve group sessions during the week, with a maximum of six children per group. Each child normally joins a beginners group, with children attending sometimes from as young as four months. They then go into the two to three year-old group, then on to three to five year-old group.

The School for Parents began life in 1983, but the current school was purpose-built in 1992. Since 2001, the school has been provided through funding by the Dame Vera Lynn Trust. The Trust runs two schools for parents, the other being in Suffolk, and a fundraising team based at Five Oaks needs to generate in the region of £660,000 every year to keep the schools running.

Regional Fundraiser Rosie Wyer said: “Dame Vera Lynn had been involved in the school for some time, and when she heard it was losing its funding she pulled all of her celebrity friends together and they very quickly raised about £250,000 to keep the school going and established a fundraising team.The school took her name on because she was the one that made it happen.”

Ruth Whitbread, Head of Fundraising and Marketing, added: “Dame Vera has been involved with Cerebral Palsy for a long time, perhaps as long as sixty years.When there was a possibility that the centre could close she was determined to keep it going. It is something that is very close to her heart.”

The running of the School for Parents is the responsibility of Sarah Ffoulkes Roberts, Head of Early Years, who is supported by experienced full-time and part-time staff. Sarah said: “The team here work in partnership with parents so it is empowering for them. It’s a positive atmosphere with a ‘can-do’ environment. We are looking at what is possible for the children and how to solve the problems that they have.

“We try and give parents the confidence and practical skills to help their children. Because they come every week, the skills they pick up here are reinforced at home and the children make progress. It’s a very holistic approach so we are looking at all areas of a child’s development.

“There is a theme to each session and the children get used to that pattern. That makes them feel secure and helps them with their learning. Our children need to learn a lot of the skills that come naturally through maturation and development to other children. Every child is unique in that they all have different needs and abilities, but we focus on what children can do and the next steps forward.”

Rachel Sebastino, Deputy Head of Early Years, added: “The sort of things we work on here are rolling, balancing techniques, propping up their body, head-rolling, visually tracking objects, tracking by sound, and similar activities. We have lots of games and lots of singing. We use the swimming pool too, with sessions based on the Hallywick concept (a swimming method developed for disabled people) so there is an adult with every child rather than us using floats.

“We also have the Early Years Play Area. We were fortunate enough to have some funds donated to develop the area a couple of years ago, and it was designed to specifically meet the needs of the children.”

In recent years, fundraising and major donations have become more difficult to come by. However, businesses including Horsham-based chartered accountants Spofforth’s and the estate agent Guy Leonard and Co are among the Trust’s supporters.The fundraising team host golf days, fire walks, abseiling events, concerts and also has places in the Brighton Marathon.

Sarah said: “We rely on local donations, and we’re very fortunate that we have a dedicated fundraising team and that the families of the children are so supportive.These are challenging times but it’s important that the School for Parents remains strong in the future.

“We are finding that more and more families are phoning up. We have seen forty families since last September wanting places at the School for Parents, so Rachel and I have to assess all of those new children. We want to be able to meet the demand. We’re always looking at maintaining the quality that we have but also meet demand for new families that want to attend.”

If you would like to support these families by making a donation you can either send a cheque payable to the Dame Vera Lynn Trust to the address below or by debit/credit card over the telephone. Alternatively if you would like to commit to a monthly donation please visit www.dvltrust.org.uk to download a Regular Giver form. The Dame Vera Lynn Trust, Trust Office, Ingfield Manor School, Five Oaks, Billingshurst, RH14 9AX Tel: 01403 80444. Email: trustoffice@dvltrust.org.uk